The Results

Here's an indicator of how our day at the hospital went...

 before we could even eat dinner, Kean fell asleep

at the couch-- standing up!

(Personally, I was pretty close to doing the same).

 We had another one of those humdinger days where his

port would not give up blood-- no matter how many times

we did the Hokey Pokey, wiggled his arms up in the air

or changes positions.

That port of his-- I swear.  I love it and hate it.

Ah well, he is scheduled to have surgery (for removal) on December 10th.

 All the blood challenges added extra stress and extra time

but we finally made it up to PICU, where our boy was

grouchy and hungry!

They were a bit concerned about putting him under with as much

gunk as he has in his nose.

The respiratory therapist (who we adore) triggered a very

bloody nose as she was suctioning him out.

So that added to the fun for the day.

That dribbly blood didn't stop until we were home hours later.

 They sedated him today to do some tests on his heart.

One of the Chemo drugs he was on causes heart damage

that could show up now or thirty years from now (my 

understanding is it effects the cell growth in or around the heart).

 I had it pretty good today-- lots of help keeping us from

  worrying.  We had one of our favorite nurses taking care of Kean.

Get this, Jim was one of Kean's nurses in the NICU when he was

just a wee lad-- when he was first born.

Once in a while, he gets assigned up to PICU and we have

been lucky enough to have him over the years.

 And then we had this guy-- one of our favorite friends in the world--

"THE" Jason Hosick from Camp Rainbow Gold.

It sure helps to have friends there to keep things from being

so serious.

 As we left, we came across this guy-- hanging up the plaque

for the Hall of Heroes.

 I want you to know-- I did not order this plaque with my

name on it-- the hospital did.  It's kind of embarrassing.

But... I guess my telling everyone that with the amount of time

we've spent at St. Luke's over the past nearly 7 years, that we should

have a wing named after this-- finally fell on the right ears!

I did get a call late this afternoon from the Doctor's office.

His heart looks great.  Phew.  We survived "scanxiety"

until the next time.

Oh, and Kean is starting another antibiotic.

His rash is better than it was but still definitely present.

Between that and his horrid, runny nose-- maybe, just

maybe, this time will be the charm.

And, they took him off the sulfa drug he's been on for

over three plus years- just in case that is the culprit.

Fingers crossed this will be it!

The First Hurdle

I don't know that today could get much bigger.

Shortly after Kindergarten, we whisked Kean off to the hospital

for his first check-up and testing now that he is done with Chemo.

He was tired but happy to see his nurses, doctors and friends.

 Of course, we Barker's don't know how to do anything small or boring.

Kean's port once again decided not to cooperate.

Initially, we got some brown blood (not a good sign) and then

his port just up and refused to share any of the red stuff.

 So he earned a dose of TPA, which earns all of us a good

extra hour of ordering the stuff and then waiting for it to "un-clot"

his port.

And thankfully, it worked!

 We met with Kean's Oncologist and had a very interesting conversation

about what the chances are that his cancer will come back (about 15 percent)

but, and this is a big but, new and huge developments in the cancer world

have come up with a process of re-engineering T-cells to attack the cancer cells

and they now have a 95% cure rate (instead of 60 something).

So that was quite a comforting conversation.

Kean's counts look good, they'll continue monitoring and testing him

every month and I will work on relaxing and not living in fear 

of the big C coming back to my boy.

As we finished up the exam, Kean was led down the hall...

 to the Chemo suite where many of the nurses and staff members 

were waiting.

And I think you will understand why this is my new favorite song!

So, so cute!

Kean was hilarious-- eating it all up. 

 My two favorite moments?

When he took the tissue paper out of his present and took off

like a champion waving his flags to the crowd.

 (They gave him a bear, a train and a hand made blanket).

 And then here's my second favorite moment.

He walked over to his regular Chemo chair, clapped his

hands (as if saying let's get this show on the road)

and hunkered down for Chemo.

Oh what a silly boy.  It will sink in one of these days.

 After all the excitement, we headed up to the 4th floor

to see for the first time the Hall of Heroes portraits all hanging

on the walls.

 It was powerful

And the perfect way to finish off the day.

It Is Up!

Everything seems to be happening so big and so fast.

Three years ago, I had a dream, a wish- I'm not sure

what to call it- but I wanted the walls of the hospital to 

be covered with portraits of the children I admire.

I wanted their stories to let other families starting down

the cancer road to know they are not alone.

And I wanted this "Hall of Heroes" to give other children

and their parents hope and encouragement.

Today, that dream became a reality. The

22 portraits of children who are fighting cancer

or have fought, and one brave boy who passed on went 

up on the walls at St. Luke's Children's Hospital today.

I almost feel like I birthed a baby-- this has been such a

labor of love.

My dear friend, Fabiana who took all but one of the pictures

was there as they hung each portrait.

I wish I could have been there-- but love, love, love

what she wrote:

Ideally you want any project that you work on to touch the lives of others in a positive way. Today, as the installation of the Hall of Heroes went up, a young mom showed pictures of these cancer survivors to her sick child. She explained that they once had what he has and that they were 'all better'. MISSION ACCOMPLISHED.

We are off to a magnificent start.

This will have a huge impact.

I just know it!

Listen Up!

Okay, we are in crunch time.

Baldapalooza is this Saturday

(get your tickets now they go up at the gate:

 www.baldapalooza.org).

This week has been a whirlwind

trying to keep up with life and do our media blitz.

Last night our local NBC station did

a beautiful story on our Hall of Heroes

(what our first Baldapalooza raised money for).

Trust me, it is worth watching-- you'll totally understand

why we kill ourselves off for this event.

http://www.ktvb.com/story/news/local/outreach/sevens-hero/2015/08/26/wall--heroes-gives-hope--families-fighting-cancer/32365161/

And then this morning, I should say, well before 

the sun came up, I went on our local ABC station

to talk about Balda.

 This time, I got to be on with the Runaway Hamsters.

Triplets and an older sister who had a hit with a song 

they wrote for a classmate fighting cancer.

These cuties will be our very first act after the gates open.

Thankfully, my mom came over to get the girls off to school

and love on Kean.

Somehow, she even got him to eat a little bit.

Good thing, since I failed to get him to eat much the rest of today.

I wish he could understand that this is the last week (we hope)

he will feel this ultra lousy.

18 days left, 18 days.

A Little Media & A Little Methotrexate

The media machine is about to kick in full force.

We are about a week and a half away from Baldapalooza

and we have lots of coverage blitzing the airwaves

from here on out.

Today, darling Maggie O'Mara from channel 7

interviewed us at St. Luke's about the Hall of Heroes

that will soon grace the halls.

 One of our cute cancer families was part of it.

That's 8 year old Shae who had -- no exaggeration-- about 50

lymph nodes removed from her neck after getting diagnosed

with Stage 3 Melanoma.

The story airs next Tuesday night -- all 22 of our Hall of Heroes kids

will be Seven's Heroes.

 Kean didn't get a nap today and took his yucky Methotrexate

(so of course, now he won't eat)!

 Poor kid couldn't stay awake while I made

the dinner he wouldn't even taste.

Sigh...

We'll give food a try again tomorrow.

A Night To Remember

Okay, okay, I know my title totally sounds like

a prom theme.

But I couldn't think of anything more appropriate.

Tonight was really one of those nights I will never, ever forget.

After two plus years of work, tonight we unveiled the Hall of Heroes

portraits to the families, donors, supporters and staff at St. Luke's

Children's Hospital.

 For a little background, we are about to have our 3rd Baldapalooza

to raise money for Idaho's children battling cancer.

The first year we raised money to create the Hall of Heroes--

portraits of 22 children battling cancer, complete with their

stories and words of advice for other families starting down

that horrific road.

It's been more work than you can imagine

but oh, was it ever worth it tonight to see--

 the faces of some of the parents as they saw the portraits

of their children holding photos of themselves while in the 

throes of battling cancer.

My dear friend Fabiana took this powerful picture

(and donated her time and talent to shoot all but one of

the portraits.  One of the children featured, Anthony passed

away last year).

 I particularly love this collage.

The cute as a button little girl, Shae is one of the toughest

warriors you'll ever meet.  If I remember right, she had

Stage IV Melanoma on her neck.

The darling girl next to her with glasses is Taylor.

My girls adore Taylor-- she kicked cancer's butt when she

was younger and is now working at the hospital and studying to be a nurse.

She also volunteers at Camp Rainbow Gold-- the magical organization

we are raising money for this year.

 Marnie - on the left, is the Nurse Practitioner who sees

Kean and works with all the kids with cancer.  We have grown to

love this woman through the three years we've been seeing 

her and the other doctor's at MSTI.

Zoe, in the center is the head of Special Events for the hospital--

and my lifeline as we've slogged through bringing this dream to reality.

 Finally, this is one of the few pictures I actually took.

This is of one of the cute moms-- holding the portrait

of her child she gets to take home (thanks to Framed Legacy

who donated all of our printing and framing) and a beautiful

book Fabiana put together of all of the children and their stories.

We will have all of these portraits and some of the children

on hand at Baldapalooza on August 29th.  This will be the only

time the portraits will be out in the public before being hung on the walls

in the children's Oncology Unit at the hospital.

If that's not a reason to come to Baldapalooza, I don't know what is!

Ladies and Gentlemen, Can You Say "MIRACLE"?

Grab some popcorn.

We had a huge, huge day

so this will be a long post.

Kean has heavy Chemo today-- his last one sedated.

It didn't start out too well. 

His "persnickety port" wouldn't let the nurses squeeze out any blood

until after he got a dose of anti coagulants. 

I must need to learn more patience.

But thankfully, it got better (much better) from there on out.

The lady in blue-- Fabiana Huffaker was our Chemo date for the day.

In my book, she's one of the top photographers around and a dear friend.

She spent countless hours last week shooting portraits of 20

cancer kids for our Hall of Heroes gallery.

And trust me, they are stunning.  

She brought her camera along today and took some

extremely touching pictures of our little warrior-- pictures I will truly treasure.

The lady in red (the red hair) is my friend Zoe - the head of special

events for the hospital.  We had a mini meeting in the PICU

while waiting for Kean's procedures to start and plotted out 

how we will redecorate the Pediatric Oncology Unit to make

room for all of the portraits and stories of these kids.

 And then finally, it was time to start.

His Chemo went smoothly.  He got two drugs today-- one in his 

spine and brain.  So glad to have this behind us.

His Oncologist can't quite figure out why Kean's hands

(and his feet and torso-- a bit) are yellow.

He ruled out jaundice, some other condition caused

by eating or drinking too much carrots, squash etc.

and then late this evening called to rule out Thyroid issues.

So the mystery continues. 

 Here's the exciting news of the day - though.

After they finished administering his Chemo, they kept

him sedated for another hour plus.

A doc from Elks Hearing and Balance came over to 

give him an ABR-- a sedated hearing test.

 When she was done, she said to me that in all her years 

she has never been able to tell a parent that their child

NO LONGER needs a hearing aid.

That is, until today.

 He got two hearing aids when he was quite young, then it was cut down to just

his right ear.  He has fought that blasted torture device since day one.

His therapists and Byron and I have always suspected his hearing

was better and he did not need it.  

And today, we had that confirmed and had our MIRACLE.

They told me early on his hearing loss was "conductive" and that 

there was a minuscule chance of it being corrected but

that rarely happened and to not get my hopes up.

I didn't get them up but I'll tell you I have been up in the clouds

today over this news.

Somehow, we made it home in time to drop Kean off with 

my friend Calene so I could run to Holland's Middle School graduation.

 I missed the awards ceremony this morning where she got

two awards and where Greer knocked it out of the ballpark

and sang I'm told a killer solo to the school.

 It was so fun to see Holland surrounded by her good

friends and so happy.

They are all scattering to the wind next year and going

to several different high schools.

Kind of a bittersweet day for her.

Bittersweet for her but sweet, sweet, sweet for me!

The Stubbornness Chromosome

We had a lovely surprise visitor at the house this morning

when we got home from horse therapy.

Maddie Clark was there bearing a big bottle of orange juice

for the Keanut man.

He has been hooked on OJ lately and can't seem to get enough of it.

I tell ya, this boy is stressing me out.

I got a call from his Endocrinologist's office today

telling me he's too low on his "fructosomine"-- some

sugar level and now needs to eat a small meal

every three hours.

Um, maybe the doc can do better at getting this boy to eat and drink.

I swear, he got an extra chromosome of stubbornness.

He will only eat and drink if he wants to.

Take tonight, for example, I tried about everything in the house

and couldn't get him to eat more than a few bites of food and

a few bites of a smoothie (spiked with tons of raw corn starch that takes

10 hours to break down in his body so he won't have a hypoglycemic 

seizure).  And just when I thought perhaps, maybe, I got enough

down him-- he threw it all up.

Arggghhhhhhh!

We will see how he does in the morning.

(I did get him to drink some chocolate milk with corn starch).

As for much better news,

Holland spent the evening downtown at one of the parks

helping our photographer friend, Fabiana

as she did a handful of photo sessions with some

of our cancer heroes.

Fabiana is shooting 20 cancer kids this week

as we get everything done and ready for our

Hall of Heroes at St. Luke's on the Pediatric Cancer floor.

She showed me some of her shots in her camera this evening

and they are beautiful!!!

Can't wait.

Special Delivery

A year and a half of work, planning and wading through red tape

is starting to come together.

Our friend, Brent Coles dropped these framed pictures

of Kean off this evening.

 You probably can't tell, but there is a short essay

at the bottom of each picture that tells Kean's story

and gives other cancer families advice on how to

survive this journey.

The extremely talented Fabiana Huffaker

did the photography- and let me tell

ya, Kean is not the easiest and most cooperative subject.

The pictures go to the hospital with us tomorrow

(Kean has Chemo)

and will be on display as we try and get

other cancer families to tell their stories

and apply to have their children as part of

our hospital "Hall of Heroes" on the pediatric oncology floor.

When Kean was first diagnosed, we spent hours circling the 

nurses desks in a little red wagon-- to try and help Kean escape the pain.

I remember it wasn't long before I'd memorized all three pieces of artwork

(and every sign from soiled linen closet to family kitchen in the area).

I also felt so terribly alone.

Hard to believe this idea that hatched clear back then-- to tell these brave stories

and to let the children and their families know they are not alone

and can do this-- is coming to fruition.